Conference round-up: Medicine, Markets and Morals Network Meeting Three

Last October saw the first meeting of the Medicine, Markets and Morals Network. Today and yesterday I attended their third and final (for now) meeting in London. The network brings together researchers from across the social sciences and humanities to discuss issues relating to resource allocation in health care. A book is planned and the website will be maintained, so hopefully the Network has a future and will produce something more permanent. For now, here are some of the overarching themes that I saw being discussed at the conference.

To deliberate or not to deliberate?

I don’t know what it is about philosophers that enables them to talk so well without slides. The conference started with a prime example in the shape of Jonathan Wolff discussing alternative approaches to valuing health care. Should we consider preferences, experienced utility or capabilities? And whose? Jo suggested that there is no single best approach and argued in favour of a discursive, deliberative approach.

This became a recurring subject for the event, to which we returned on the final day with Ruben Andreas Sakowsky arguing that deliberative evaluation is a better way of eliciting individual preferences. To this end, he suggested that we ‘upgrade’ the way we do discrete choice experiments. Leah Rand argued that we need to upgrade the notion of ‘accountability for reasonableness’, which is at the heart of decision-making processes in health care. Leah argued that there is a need to ensure legitimacy in the process of decision-making and a requirement for fair consideration of reasons.

But deliberative processes present challenges. Do people know enough to make informed decisions about the allocation of health care resources? If they don’t then there is still an argument to be made that in a democracy it is the views of these people that should be acted upon. But can deliberation still be meaningful if the people involved have no understanding of the context or implications of their decisions?

Information – particularly who has it and which bits of it matter – was the major theme of the conference for me. I think a lot of what we discussed related to the incompatibility of evidence-based policy and democracy. I’ll come back to that later, once I’ve discussed some of the other speakers’ talks.

Systems, structures and marketisation

Another major subject was the Health and Social Care Act 2012 (HSCA). Richard Taunt discussed the HSCA, noting the tendency for people to view the apparent fiasco as undemocratic. Richard argued that this is not the case, but rather issues like this have “no salience in electoral politics”. Even if people say that NHS policy will determine which way they vote, in reality votes don’t correspond to what people say is important. One option is to build sustainable development into democracy, such as has been tried with the Well-being of Future Generations (Wales) Act or the Finnish ‘Committee for the Future’. But, Richard argued, we already have the Health Select Committee and plenty of think tanks; ‘upgrading democracy’ should not be about structures. Rather, we should focus on encouraging the right kinds of behaviours, such as humility and continual learning.

Later in the day, Allyson Pollock presented a quite different story about the Health and Social Care Act; as providing the mechanisms for the deconstruction of the NHS. Allyson explained that the Act does away with the duty to provide universal health care according to need, and that the closure of hospitals is the evidence of this possibility being realised. The risk presented was that we might end up with a US-style system of health care funding and provision.

Therese Feiler presented a theological basis for the use of economics-type thinking in health care, which took us all out of our comfort zone; a great thing! Therese suggested that the use of diagnosis-related groups (DRGs) is a part of the process of the commodification of health care.

Mary Guy discussed the legal situation in the UK and The Netherlands regarding the application of competition law to health care, which is key to the potential for marketisation of the NHS. The take home message is that whether or not the NHS could be subject to competition law (in its current organisation) is still to be decided in the courts.

Rudolf Klein gave a notably lo-fi talk on the need to ration expectations rather than treatments or procedures. He argued that the NHS agenda is determined by the state of the economy. While the NHS Mandate (which we were all encouraged to read) lists many goals, the top item on the list of NHS ‘must-do’s relates to financial stability. The question is, what are we willing to sacrifice from the long list of NHS goals? (There was support in the room for allowing longer A&E waiting times.) And what about the cost of transparency and statistics in order to maintain ‘anticipative accountability’, which is held to be very important? Can we sacrifice some of these costly processes which in turn help create more goals for the NHS mandate?

Evidence, narratives and democracy

Chris Newdick argued that bioethics hasn’t done us much good, in that the focus on autonomy has bolstered neoliberalism. He discussed the notion of public health ethics and asked why community is not the starting point for the ethical debate rather than the individual. In this sense, has the neoliberal agenda been more successful in the debate about health care, as well as more broadly?

I think this brings us back to the issue of information. The idea that autonomy and/or the free market is paramount is an a priori notion. The invisible hand is a nice story, and people are compelled by it. Evidence, on the other hand (the visible hand), is not compelling. One can always find evidence to support a claim and as such the non-expert may be inclined to distrust all evidence. A compelling story is more difficult to disregard.

In his closing remarks, Cam Donaldson mentioned Robert Evans’s notion of zombie policies. These are not usually evidence-based zombies but about stories. Cam presented Alan Williams’s old argument about the distinctiveness of health care as akin to a duck-billed platypus. This provides a nice analogy, but it still depends on evidence. This is why we see the ‘health care is just another good’ argument coming back time and time again; recently in the broccoli debate in the US.

The problem is that the basis for publicly provided health care requires a lot of thought and a lot of foundational understanding of how things work in a particular economic, political, legal, historical and ethical context. For example, to know that health care is not broccoli you need to understand moral hazard (etc), and that this has been observed. There is evidence. However, in order to support neoliberalism and a free market in health care you don’t need any of that. All you need is basic intuition and a compelling heuristic: leave people, institutions and corporations to do as they please and the invisible hand will sort it all out.

This at least partly explains why academics tend to think differently about resource allocation in health care. Rachel Baker and Helen Mason presented their work on eliciting public views about the allocation of resources at the end of life. Using Q methodology (for which we were given a brief tutorial) they have identified three different viewpoints that people tend to adopt. The first group support the notion of value for money, with no special cases; QALY-maximisers would fit into this group. The second believe that life is precious, and they are not likely to accept any restriction of health care due to costs. The third is a more nuanced group that value wider benefits while also acknowledging the importance of opportunity cost.

On the first day we attendees were presented with 18 statements, with 7-point likert scales to elicit our agreement. The same questionnaire was used in a large online survey of a representative sample of the UK. This survey is designed to elicit the prevalence of the different viewpoints. Viewpoint 2 was by far the most common in the general population. Meanwhile, in the room, viewpoint 3 was the leader. As for me, the stats showed that I was the strongest supporter of viewpoint 3. This discrepancy between the public and a group of academics may not come as a surprise, but it is noteworthy. Viewpoint 3 is the most nuanced position. It acknowledges the messyness of health care resource allocation decisions. The findings of the survey suggest to me that the public do not recognise this messyness, or at least employ a simpler decision process that ignores some of the messyness. They may be right to do so, but I suspect not. As academics we know more about what we do not know; we have more known unknowns. The general public on the other hand don’t – and can’t be expected to – understand all of the challenges of resource allocation in health.

One of the very last points to be raised in the concluding discussion was whether homeopathy should be funded on the NHS. Most of us agreed it shouldn’t, but Ruben bravely stuck his neck out and suggested that if people want it then who are we to deny it? I think there’s an analogy to be drawn here between homeopathy and free market health care. We know homeopathy isn’t good for people. We know market forces in health care (broadly speaking) aren’t good for people. But both of these assertions are empirical; dependent on understanding a long history of evidence and fundamental notions of how we determine what is good for people. The public don’t have this understanding. The ‘invisible hand’ and ‘like cures like’ make for far more compelling and easily attainable interpretations of reality. So people will vote for them. But that is not a good thing.

Sofosbuvir: a fork in the road for NICE?

NICE recently completed their appraisal of the hepatitis C drug sofosbuvir. However, as has been reported in the media, NHS England will not be complying with the guidance within the normal time period.

The cost of a 24 week course of sofosbuvir is almost £70,000. Around 160,000 people are chronically infected with the hepatitis C virus in England, so that adds up to a fair chunk of the NHS budget. Yet the drug does appear to be cost-effective. ICERs differ for different patient groups, but for most scenarios the ICER is below £30,000 per QALY. In the NICE documentation, a number of reasons are listed for NHS England’s decision. But what they ultimately boil down to – it seems – is affordability.

The problem is that NICE doesn’t account for affordability in its guidance. One need only consider that the threshold has remained unchanged for over a decade to see that this is true. How to solve this problem really depends on what we believe the job of NICE should be. Should it be NICE’s job to consider what should and shouldn’t be purchased within the existing health budget? Or, rather, should it be NICE’s job simply to figure out what is ‘worth it’ to society, regardless of affordability? This isn’t the first time that an NHS organisation has appealed against a NICE decision in some way. Surely, it won’t be the last. These instances represent a failure in the system, not least on grounds of accountability for reasonableness. Here I’d like to suggest that NICE has 3 options for dealing with this problem; one easy, one hard and one harder.

The easy option

The simplest option involves the fewest changes to the NICE process. Indeed, it would involve doing pretty much what it does now, only with slightly different (and more transparent) reasoning. In this scenario NICE would explicitly ignore the problem of affordability. Its remit would cease to be the consideration of optimality on a national level and it would ignore the budget constraint. NICE’s remit would become figuring out which health technologies are ‘worth it’; i.e. would the public be willing to purchase a given technology with a given health benefit at a given cost. To some extent, therefore, NICE would become a threshold-setter. The threshold should be based on some definition of a social value of a QALY. This is the easy option for NICE as setting the threshold would be the only additional task to what they currently do. Its threshold might not change all that much, or may be a little higher.

However, even if NICE denies responsibility, clearly someone does need to take account of affordability. Given the events associated with sofosbuvir it seems that this could become the work of NHS England. NHS England could use a threshold based on the budget and current QALY-productivity in the NHS. One might expect NHS England to be in a better position to identify the local evidence necessary to determine appropriate thresholds, which would likely be much lower than NICE’s. It would also be responsible for disinvestment decisions. Given the nationwide remit of NHS England, this would still prevent postcode lotteries. The implication here, of course, is that NICE and NHS England might use different thresholds. Any number of decision rules could be used to determine the result for technologies falling between the two. Maybe this is where considerations for innovation or non-health-related equity concerns belong. It seems probable to me that NICE’s threshold would be higher than NHS England’s, in which case NICE would effectively be advising increases in the health budget. This is something that I quite like the sound of.

The hard option

Personally, I believe that NICE’s failure to justify their threshold(s) is quite a serious failing and undermines the enterprise. The hard option will involve them defining it properly, informed by current levels of QALY-productivity in the NHS. Thus properly adopting a position as a threshold-searcher, and doing the job prescribed to NHS England in the ‘easy option’. NICE guidance would therefore be informed by the current health budget and affordability, and therefore must include guidance on disinvestment. The first stage of this work has already been done. The disinvestment guidance would be the hard part. This argument has already been much discussed, and seems to be what many economists support.

I don’t find this argument entirely compelling, at least not as a solution to the affordability problem. To solve this issue NICE would need to regularly review the current threshold and revise it in light of current productivity and the prevailing health budget. It has no experience of doing this. I believe the task could be more effectively carried out by commissioning organisations (such as NHS England), who are in a better position to oversee the collection of the appropriate data and would have a public responsibility to do so. It might also be politically useful if decisions about affordability were made independently of decisions about value.

The harder option

The harder option is for there to be a paradigm shift in the way NICE – and health economics more generally – operates. It could involve programme budgeting and marginal analysis, or the Birch and Gafni approach. This might just be the best option, but it seems unlikely to happen nationally any time soon.

It’s possible that more cost-effective but unaffordable drugs are in the pipeline. Failure to address the affordability problem soon could seriously undermine NICE.

DOI: 10.6084/m9.figshare.1291123